Background:
The COVID pandemic is an example of a crisis challenging healthcare systems worldwide. The impact of the pandemic on providing high-quality palliative care calls for a deeper ...understanding of specialist services during crises. This is essential in preparation for further crises.
Aim:
To develop a conceptual understanding of the impact of the pandemic on specialist palliative care as an example for arising future crises.
Design:
Qualitative interview study across Germany, following a constructivist grounded theory methodology.
Setting/participants:
Eleven semi-structured interviews with experts with overarching knowledge of structures and processes in specialist palliative care between 05–07/2020 and between 02–06/2021, 23 semi-structured interviews with healthcare professionals working in a specialist palliative care setting.
Results:
The complex system of palliative care provision during crises has properties that cannot be understood as separated parts of the care process. The pandemic led to unique structural and processual challenges characterized by interconnectedness, uncertainty, dynamic, underlying dilemmas, and unclear long-term goal. In response to the pandemic, teams experienced different phases, which enhanced adaption, innovation, and progress within complex care situations. Creative strategy approaches and dynamic responsiveness facilitated innovative development and could lead to long-lasting improvement within services. Availability of information, transparent communication, comprehensible instructions, participation in decision-making, and search for solutions contributed to teams’ proactive development throughout the pandemic.
Conclusion:
Addressing the complex problems in specialist palliative care caused by crises requires system thinking and a learning mindset. This can facilitate teams to overcome the crisis and move forward rather than bounce back to normal.
Background:
Children and young people with life-limiting conditions and their families need physical and emotional support to manage the challenges of their lives. There is a lack of synthesised ...qualitative research about how music therapy is experienced by children, young people and their families supported by paediatric palliative care services.
Aim:
To systematically identify and synthesise qualitative research on experiences of music therapy in paediatric palliative care from stakeholder perspectives.
Design:
A Qualitative Evidence Synthesis was conducted using Thematic Synthesis. The review protocol was registered in PROSPERO (registration number: CRD42021251025).
Data sources:
Searches were conducted with no dates imposed via the electronic databases PsycINFO, MEDLINE, EMBASE, AMED and CINAHL in April 2021 and updated in April 2022. Studies were appraised for quality using the Critical Appraisal Skills Programme tool (CASP).
Results:
A total of 148 studies were found, 5 studies met the eligibility criteria reporting the experiences of 14 mothers, 24 family members and 4 staff members in paediatric palliative care. There were five overarching themes: emotional and physical reprieve, opportunity for normalised experiences, thriving despite life limited condition, enhance family wellbeing and therapeutic relationship central to outcomes.
Conclusion:
Music therapy provides unique benefits for this paediatric population particularly in supporting child and family wellbeing. The therapeutic relationship, interpersonal skills of the therapist and experience in paediatric palliative care are perceived as central to these positive outcomes.
The clinical nurse specialist (CNS) is 1 of the 4 advanced practice registered nurse roles and a vital component in palliative and hospice nursing care. The CNS is a specialty expert clinician ...capable of practicing in a variety of health care settings including acute care, primary care, and specialty ambulatory care. The CNS integrates palliative care standards across the 3 spheres of impact (patient, nurse, and system) to improve care patients receive at end of life, mentoring and coaching nurses in the unique aspects of palliative and hospice care (HPC), and serving as a clinical expert for the organization to ensure best practices and quality outcomes. Clinical nurse specialists are trained to diagnose, treat, and prescribe to provide holistic care to their patients. However, challenges exist for the CNS role due to variations in state regulations regarding title protection and scope of practice leading to inconsistency in and misperception of the CNS role. Clinical nurse specialists have a wealth of expertise that can lead to systematic improvement in patient outcomes, advances in hospice and palliative nursing practice, and management of HPC patients and their families. Clinical nurse specialists are a hidden treasure that should be integrated into HPC practice.
Between 1998 and 2021, the Open Society Foundations (OSF) network invested around US$50 million in supporting the emerging field of palliative care worldwide, funding different approaches and ...interventions to advance its objective of putting palliative care on the global public health agenda.
To describe six approaches that were instrumental to the successes of Open Society Foundations’ support in building the global field of palliative care. A robust discussion of lessons learnt is unfortunately not possible because Open Society Foundations did not commission a rigorous evaluation of the impacts of its investments.
This article describes these six approaches: Investing in versatile palliative care leaders at national and regional level; investing in palliative care champions within the OSF network; proactively engaging the World Health Organization (WHO) in efforts to promote palliative care; developing tools and skills to improve palliative care financing; using a human rights-based approach; and supporting self-advocacy by people with palliative care needs.
Deep, long-term investments in national and regional champions from the palliative care community and OSF's own network built palliative care leaders with well-rounded skills, knowledge and opportunities to develop their own networks. The active engagement and involvement of the WHO in efforts to advance palliative care enhanced the credibility of palliative care as a discipline as well its champions, whereas the human rights approach resulted in more diverse strategies to overcome barriers to palliative care. The focus on palliative care financing and self-advocacy showed significant promise for impact.
The approaches and strategies described helped a nascent palliative care field develop into a health service that is increasingly integrated into public health systems. Other funders and national governments can build on OSF's long term support for the palliative care field and support further integration of palliative care within public health to increase access.
Heart failure remains a condition with high morbidity and mortality affecting 23 million people globally with a cost burden equivalent to 5.4% of the total health care budget in the United States. ...These costs include repeated hospitalizations as the disease advances and care that may not align with individual wishes and values. The coincidence of comorbid conditions with advanced heart failure poses significant challenges in the geriatric population. Advance care planning, medication education, and minimizing polypharmacy are primary palliative opportunities leading to specialist palliative care such as symptom management at end of life and timing of referral to hospice.
As the COVID-19 pandemic wears on, its psychological, emotional, and existential toll continues to grow and indeed may now rival the physical suffering caused by the illness. Patients, caregivers, ...and health-care workers are particularly at risk for trauma responses and would be well served by trauma-informed care practices to minimize both immediate and long-term psychological distress. Given the significant overlap between the core tenets of trauma-informed care and accepted guidelines for the provision of quality palliative care (PC), PC teams are particularly well poised to both incorporate such practices into routine care and to argue for their integration across health systems. We outline this intersection to highlight the uniquely powerful role PC teams can play to reduce the long-term psychological impact of the COVID-19 pandemic.
Palliative care professionals are exposed to suffering on a daily basis. Working in such an environment frequently raises existential issues, psychological challenges, and emotional distress, that ...can detract from compassionate care. Identifying factors that help professionals cope with frequent exposure to issues related to mortality, such as compassion, could enhance palliative care providers’ and patients’ quality of life and wellbeing.
To improve our understanding of the factors associated with professionals’ inner life studying the role of self-compassion as a mediating variable between self-care and awareness and professionals’ quality of life, and quantifying the impact of compassionate care.
A cross-sectional online survey of palliative care professionals was conducted through the Spanish Society of Palliative Care. 296 professionals answered the survey.
The model tested showed an adequate fit (χ2(212) = 476.688 (P < .001), CFI = .907, RMSEA = .066 .058,.073, and SRMR = .068), and the hypotheses were supported. Self-care and awareness predicted coping with death and self-compassion, which in turn predicted professional quality of life. Self-compassion had the greatest predictive power. Professional quality of life showed a statistically significant and positive effect on personal wellbeing, explaining more than 50% of its variance (R2 = .574; P < .001).
For palliative care professionals, the cultivation of self-compassion is equally needed as compassion for others. Professional quality of life and compassionate care are related to professionals’ wellbeing: when professionals take care of themselves, this will lead in a more compassionate care, but also in healthier, happier professionals.
Purpose
In resource-limited settings, family caregivers (FCGs) of adult cancer patients (ACPs) function in a context marred by high patient symptom burden, limited cancer care services and support ...and high caregiving burden. Despite this predicament, little is known about the quality of life (QoL) of FCGs in these settings. The study aimed to explore the determinants of QoL among FCGs of ACPs in Uganda.
Methods
A cross-sectional design was used to collect data from 284 FCGs of ACPs. The study questionnaire was composed of the Katz Index, Family Pain Questionnaire, modified Chronic Pain Self-efficacy Scale and the Caregiver Quality of Life-Index-Cancer.
Results
The mean age of FCGs was 36 ± 13.8 years. Most ACPs had stage 3 or 4 cancer (56%), severe pain (66.2%), reported moderate pain relief (51.1%) and were on chemotherapy (60.9%). The overall QoL of FCGs (70.2 ± 20.3) was moderate and 46.8% had low QoL. Most FCGs had high positive adaptation or financial concerns (55.3%) and low QoL in terms of burden (50.7%), disruptiveness (53.5%) and support (56.7%). The main determinants of overall QoL were FCGs’ knowledge and self-eficacy for cancer pain management. The determinants of burden, disruptiveness, support and positive adaptations and financial concerns are reported.
Conclusion
The key determinants of the QoL of FCGs were knowledge and self-efficacy for cancer pain management. In Uganda and similar settings, interventions to build FCGs capacity in cancer-related pain and other symptom management may help to enhance the QoL of FCGs and the ACPs.
Purpose
End-of-life sedation, though increasingly prevalent and widespread internationally, remains one of the most highly debated medical practices in the context of palliative medicine. This ...qualitative study aims to elicit and record the perspectives of leading international palliative care experts on current debates.
Methods
Twenty-one professionals from diverse backgrounds, sharing field-specific knowledge/expertise defined by significant scholarly contribution on end-of-life sedation, were recruited. Open-ended, semi-structured interviews, following a topic-oriented structure reflecting on current debates, were conducted. Results were analysed using thematic content analysis.
Results
Three main aspects of sedation were identified and discussed as potentially problematic: (a) continuous deep sedation as an extreme facet of end-of-life sedation, (b) psycho-existential suffering as an ambivalent indication for sedation and (c) withdrawal or withholding of artificial nutrition and hydration as potentially life-shortening. On these grounds, concerns were reported over end-of-life sedation being morally equivalent to euthanasia. Considerable emphasis was placed on intentions as the distinguishing factor between end-of-life acts, and protective safeguards were introduced to distance sedation from euthanasia.
Conclusions
This study shows that, despite the safeguards introduced, certain aspects of sedation, including the intentions associated with the practice, are still under question, parallels being drawn between end-of-life sedation and euthanasia. This reaffirms the existence of a grey area surrounding the two practices, already evidenced in countries where euthanasia is legalized. More clarity over the issues that generate this grey area, with their causes being uncovered and eliminated, is imperative to resolve current debates and effectively inform research, policy and practice of end-of-life sedation.
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